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Monday, September 24, 2018

Seeing Rainbow By Rachel Seppie

(Editor's Note: This reflection emphasizes the importance of Craniofacial Acceptance Month for all of us. Rachel Seppie, mother of a son born with craniosynotosis, discusses the birth of her son, the love of her daughter for her sibling, and how they took on the world as a family.)By Rachel Seppie

As I look back this September on Craniofacial Acceptance Month it brings me back to a moment five years ago. I lay heavily pregnant in bed letting my three year old daughter Aspen paint my toes, our daily ritual revolved around her excitement for ‘her baby’ to arrive. She would tell me daily how great he was going to be, she shared with me the things she would teach him, which happened to include “How to clean her room”.She thought the coolest name for him would be Rainbow and so to humor her we lovingly referred to baby brother as Rainbow for the remainder of the pregnancy.The pregnancy was difficult and after 35 weeks in the womb on a dry November morning a giant Rainbow appeared in the sky and he made his debut.

Rainbow was emergency airlifted to the nearest major medical center moments after his birth.Aspen was not yet able to hold Rainbow in her arms.The next 7 days are a complete blur of scans, blood tests and imaging.In the blur of entering the Cranio world there is one moment I will never forget.After arriving at the hospital shortly after his delivery they prepared to lay him in my arms for the first time. I tried to take him in, he certainly looked about as good as we felt.His funny shaped head was bruised, his skin was red, his eyes swollen shut and his tiny nose flattened completely to one side of his face.With the cords and tubes it was impossible to take in all of his features but one thing was certain, he was the most handsome man I had ever laid eyes on.Unable to hold his tiny hand in mine because both of them were bound by tape holding IV’s in place, I improvised and nestled him as close as possible. I took a deep breath as I snuggled his fragile body close, love instantly filled the fear in my heart.

I think I had memorized the tile floor in the first stall of the bathroom outside of the Neonatal Intensive Care Unit. I had spent a lot of time in there hiding from reality and crying my eyes out.Today was no different although I should have been happy; I was preparing to take my son home after a stressful week-long stay in the hospital.He would come home for the first time, finally meet his big sister, see his room, and celebrate his first Christmas.I was taking him away from the dozens of doctors and torturous tests that had been run on him in the past week.I would momentarily rescue him from the looming surgeries and procedures that we now knew he would be facing.I stared down at my hands that were cracked and bleeding from having been washed a thousand times a day going in and out of the NICU.I felt haunted by the events of the past week, my hands proof that I wasn’t having a nightmare.Did they really trust me to take home such a medically complex child? How in the world could one child possibly take this much?How as his parent would I ever be able to watch him struggle this much? How would this affect his big sister and would she be able to handle this at such a young age? As these questions ran on a loop through my mind I thought of my daughter Aspen sitting outside the doors counting the final minutes until she finally met her brother and I cried harder. As they prepared the final discharge paperwork we stepped out of the NICU and went to eat lunch with Aspen.I cried over my grilled cheese sandwich, so scared, defeated and angry at the world for everything my family would face.As my tears fell I felt a little hand begin to pat my leg, as I turned to face Aspen she looked at me so sincerely and said “Mommy don’t cry, our baby is going to be just fine” She understood everything in that moment without us having to explain it to her.I saw God’s hand all over this situation especially when looking into my daughter’s eyes because no one could have hand picked a better sister for this little boy.She gave my hand a squeeze and told me for the millionth time that she could not wait to hold ‘Landon’ the baby formerly known as Rainbow.

Later that day we pushed open the heavy metal doors of the NICU for the final time carrying out our precious cargo.Aspen bolted to the carrier.I wanted to laugh at her excitement as she threw back the car seat cover and peered at ‘her’ baby. She looked right at him but did not see the birth defects, the tubes, the monitors.She saw her baby as beautiful as the Rainbow she had named him after during my pregnancy.“Momma our baby is soooo cute” she exclaimed.I took a photo of the moment mentally and stored it away, it was the best moment of my life.Words would never be able to describe the smile on her face, everything I felt in that moment reflected back at me in that smile.My fears of what he would face seeming to melt away with her smile.I knew that no matter what he faced he would never fight alone.Her pride for her brother radiated through the entire hospital, she saw Landon, for exactly who he was, her perfect brother.She wrapped her tiny hand protectively around the handle of his carrier and insisted on “helping” her dad carry him the rest of the way to the car.She would stop every few feet, throw back the cover and take another look at him as if she was afraid he would disappear. Having known him for 2 minutes she was already fiercely protective of him. I could have watched that scene play out again and again.

The first weeks home we were wracked with fear of the future it would have consumed us if not for the vibrant little girl who treated him like any big sister would.She was possibly the only one who saw completely beyond the diagnosis, the looming surgeries and just saw love.She became our backbone, keeping us all smiling and providing a much needed since of normalcy.I will never be able to understand how she was so perfectly chosen for him, the ways she taught us to deal with hardships and how quick to adjust to scary situations.One of my favorite memories was after his first major skull surgery, Posterior Cranial Vault Distraction. I sat in the waiting room with Aspen as she waited to see her brother.“Sis, I want you to be ready to see brother because he does not look like himself” she nodded that she understood. “Remember yesterday they had to fix his skull so his big brain had room to grow? Well he has a great big cut on the top of his head and some little metal things on his forehead, but he is okay and he wants to see you.”“Okay Mom, can I go see him now?” She responded plainly.Inside I was panicking about how she would react.Without hesitation she bounded into the room and climbed on the stool next to his bed in the Pediatric ICU. She looked right at his face and grinned “Hello there Bruddy” she called him by his nickname.“Wow, look at your horns” she added amazed, and that was that.As I glanced back in awe of my resilient kids Aspen flashed me a reassuring smile and a giant thumbs up. Landon would undergo 18 surgeries in his first 4 years of life including two rounds of Distraction on his skull.After round 2 Aspen was so impressed with her brother’s awesome new hardware she came home and stuck two nerf darts to her forehead and spent the rest of the day pretending she had Cranio as well.She has never let him go through anything alone and she has always been there with a smile and a thumbs up.

I sit here and think of how many times were we have been on the receiving end of stares and unkind words. Times that I could not swallow the lump in my throat in time to respond before my sweet little girl chimed up for us. At the Library once a child turned to her and said “Look at that weird baby over there.”I waited with my breath held several feet away to see her response, not wanting to draw too much attention just yet. “What baby?” she looked around and saw nothing. “That one, right there” he pointed at Landon.Aspen’s face went from confused to annoyed in no time flat. “That is my brother and he is notweird” she emphasized each word of her response.“He is perfect.”She calmly turned around and got along with business as usual.I swallowed a lump in my throat, my eyes stung but I refused to cry until I was safely in my car. I sat sobbing in the parking lot of the library, wishing that when people looked at him they could see what the two of us sitting in the car did.They would see someone who had been alive only six months and had battled his way back to his family many times, he suffered more pain than any adult I knew, he was brave and strong and amazing.His huge intimidating scar couldn’t have been anything different, each of the hundreds of stitches on his scalp represented a moment of bravery and every amount of pain he had overcome being anything smaller would not have done him justice.“Mommy don’t cry about what other people think, our brother is perfect just how he is” a wise little voice chimed in from the backseat.My heart wanted to explode with love for this kind, brave wise little girl.I am always going back to that moment in bed with her wondering what the chances were that she chose that name of all names. To us rainbows are beautiful, heaven sent and often signify strength after a storm.It is so fitting it still gives me goosebumps.I am so proud of the warrior she is, understanding Craniosynostosis and all that comes with it from such a young age and yet not letting it affect her relationship with her brother. We spend so much time educating our community on his diagnosis but she spends her time teaching the world about her little brother- the boy behind the diagnosis. Aspen has stuck by all the promises she made her brother while he was in the womb.She has protected him, loved him, been his friend through everything and just last week I caught her trying to teach him how to clean her room.

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